Walking The Tight Rope As A Special Needs Sibling

Being a sibling to a child with any sort of complex health condition is both beautiful and challenging.

Although this is only an observation on my behalf, as I am a mother, not a sibling, to a beautiful child with additional needs.

It’s difficult to fully understand what it must be like through the eyes of a sibling. Young minds form ideas in different ways and process things differently.

Intuitively as an observer, the experience of being a sibling of a special needs child looks loaded in every possible way. Loaded with curiosity, loaded with worry, loaded with love and loaded with fear. Some health conditions can be so volatile, that situations can change can suddenly and without warning, such as a seizure or unexpected health scare.

I know how confusing and upsetting it can be for my daughter who worries when her younger sister bites her finger, or is rushed to hospital, or in pain from an operation.

That’s why it’s so important for us as parents to provide a lot of time and space for our children who have siblings with complex health conditions.

 

As a mother, I know when I need to have a deeper conversation with my daughter, so that she can put her mind at ease with concerns for her little sister. I also know when I need to shift the focus entirely on her, which is not easy when your other child 100% reliant on you for feeding, positioning, clothing, lifting, moving… every single human function.

Lilac_Arrow

I’ve watched my daughter have to tip-toe around the house when a therapist visits, or be told she can’t go into the room because it excites and distracts her sister from her therapy session.

As a parent it can be so stressful, as there is so much riding behind all the therapy sessions, such as the financial commitment and the need for the hour to run smoothly, so that your child will receive the best therapy session possible.However, it can also come at a cost, those stressful moments when we said “ssshhh” to our daughter who is playing loudly, so that a therapy session would not be disrupted, or when a therapist hasn’t been so inclusive of her.

Natalie Roberts-Mazzeo

Sometimes she gets bored, sometimes she’s over her sister getting all the attention and sometimes she just wants to cartwheel and sing all around the house, especially in the middle of her sister’s therapy sessions!

I get it, I really do – she just wants a normal environment where she can feel free. She wants to be like her friends and their siblings, playing hide and seek or running through the parks together. Again and again, the conversations prop up like little red flags that remind me as a mother, just how delicate the special needs sibling relationship can get.

It’s so important to keep those conversations rolling with your children at all times, so they can feel comfortable to share with you their feelings which covers all emotions from fear, worry, shame, anger all the way through to love, acceptance, trust and understanding.

Keeping an open dialogue is so important, the nature of our situations as parents is that yes, our focus is absolutely out of balance because it has to. The reality for some of us, is that we have children who are severely disabled, and their life relies in the intricate care we provide 24 hours around the clock.

We love equally, yet our time is portioned up differently with the physical workload that our child with additional needs requires. It is what it is, and as long as there is love, you can conquer anything – this is one of the greatest gifts our siblings learn and witness in action.

Yes of course there are both the positive and negative sides for the siblings of special needs children, yet overall I can say from experience that it is one of the most profound relationships they will have in their life.

One that is built on acceptance, honour and a love that can conquer anything.

2018-01-04T02:02:02+00:00

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